State-Specific Cancer Data Access Requirements for Research

CDC is evaluating federal, state, and local government policies regarding cancer research to promote the use of cancer registry data for research. Cancer Registry Research Approval Process: Classification of States by Level of Approval Required [PDF-387KB] presents each state cancer registry’s requirements regarding research, by level of regulatory approval required, as of February 2017. This document is the outcome of first phase of the Cancer Data Access for Research project.

The project involves collecting—

• Human subjects review (institutional review board) application content and processes.
• Required consent processes.
• Data access procedures.
• Data linkage processes.
• Release of identifiers for patient contact by researchers.

This project serves the following purposes—

• Promotes a better understanding of the requirements for accessing cancer registry data for research.
• Identifies optimal state and registry rules and policies for the use of cancer registry data for research.
• Investigates methods to streamline IRB processes and to pilot test implementation of the best methods.
• Helps researchers manage the process of accessing registry data, including facilitating the IRB process.

More information about cancer data access at the state level can be obtained through the SharePoint site for the project. To request access to the SharePoint site, please send e-mail.